Two Weeks of the life of a Stage Four Rectal Cancer Patient in Chemotherapy Treatment--Day One
Day One
It's Sunday before chemo, and I'm shuffling my feet--badly. The anticipation of "Chemo day" makes it so I subconsciously sabotage my whole weekend with stalling and time-optimism. I get to Church late because my wafer needs changing today because I can smell it (thankfully no one else can or if they can they don't mention it).
Don't know what a wafer is? Well, here are some pictures of different pouching systems I use/have used:
First, I started with a drain-able system because that's what the hospital originally put on me to teach me how to do it. Well, that made it so I took a ton of time in the bathroom emptying and cleaning out so there wasn't a residual smell after the drain. There was always a residual smell that I could smell even if no one else said they could, so I stopped using them. For me. It's on my body anyway.
Then I used the one-piece disposable system until I gained too much weight from the steroids they have me on now. This is my favorite pouching system so far because I feel a lot cleaner, and it goes a lot faster. Only down side is the release of gas is difficult occasionally. It's easy with a two-piece system.
Now I currently use a convex wafer and a disposable clip on. It's fine because it works without any blowouts or leaks, so I'm happy for now. Once I lose the weight though (which should happen quickly being that it's steroidal), I'll probably go back to the one-piece system.
So now that you've been introduced to a few of the different systems of one brand of colostomy bags, if you want to know more, there are many different videos on YouTube you could watch.
I hop in the shower with my stoma exposed, and feel more clean than any other day I don't need to change my wafer.
I woke up at a time that would have made it so I was early to church if I was "normal" aka bagless, so I know before I even start getting ready that I'm going to Church late--because, again, stalling. Hubby takes care of the wound dressing change so my "not-quite-yet Barbie Butt" can finish its healing process. Here's what he uses to do that:
True love.
I don't get much out of Sacrament Meeting because (a) I'm late and Hubby left me so he could be on time--totally fine with that--and I was "up to" driving myself today, (b) the kids make so much noise and argue over such trivial things that I don't hear anything while sitting in the foyer to avoid as many of these germs as possible that are going around (STAY HOME, PLEASE), and (c) it's been difficult to go lately with some members of my church family coming over for the sake of pity that is written all over their faces--not that I can blame them; I was probably one of them before. I prefer to be treated as I've always been treated by people--teased, befriended, invited to things (or just come over because I have a harder time coming to you).
After Church, I don't stay for choir practice like I used to. I'm too unpredictable with my schedule because I don't know when my nausea spells hit (even with anti-nausea medications--not the one that sends me to the ER, of course), and I like to save my energy if I have some to give for my auditioned civic choir I'm a part of that I rehearse with later in the day on Sundays. The rehearsals go for 2-5 hours depending on how many rehearsals we have before our concert.
Once home from Church, I sometimes change my clothes into something more comfy (literally like sweats, not in the ironic or sexy sense at.all.), and sometimes I don't. It depends on my stoma, Bilbo. When I'm in public, I excuse myself to the bathroom to adjust fecal matter (we all know it's in there) to the bottom of the pouch to avoid "pancaking" of the fecal matter. The more "pancaking" that happens near the stoma, the more likely I have a blowout or leak. I can only wear stretchy pants (is more than for fun, is necessary, Nacho Libre) because of Bilbo as well. Jeggings, leggings, and joggers for me! Oh, and of course activewear.
When I'm at home alone, I'll let the pouch hang out so the risk of "pancaking" is essentially eliminated, however, I don't think my family appreciates it much. They've stopped mentioning it anyway. Ostomate girl's gotta do what ostomate girl's gotta do.
This Sunday was budget day. I used to like budget Sunday. We use a budget program called You Need A Budget or YNAB, that we very much enjoy. At first it was really nice to see that savings grow and the optometry school debt go down, but since cancer it's been us just getting by. This budget Sunday aster we allocated our funds to the bare minimum requirements for every category where we cannot miss a payment--utilities, food, clothing, mortgage, student loans, and kids activities (of which we chose the cheapest ones, ever--PE through the local Boys and Girls Club, one dance class for one child, orchestra for one child, swim lessons through the YMCA, and violin lessons). We've still found ourselves without a check from CHM now since September of last year which barely paid for much but we were still very grateful, and every time we sit and wait for their help we end up just barely getting by or literally not paying medical bills for a month. We're broke, simply put. And this is even following Dave Ramsey's plan. "Baby step 1": Cut up the credit cards, get on a budget (YNAB), and have a $1000 emergency fund. We've now been paying off debt ("baby step 2") as our main goal (why I've been such a workaholic) since we moved here in 2012. With our current basic payments (mortgage and student loan debt payments) over half of Hubby's current paycheck is gone per month. So, I worked too (not so much now, and I can't make what he makes... yet), and we are on track to have his student loan debt paid for by 2022 (IF we stay in our current situation without going back to the way it was before--paying off some principle. It would, of course, be nice if paying principle off monthly again was the case.) We don't qualify for medicaid and I don't qualify for disability.
We are frugal, but we are still broke. We will own the practice Hubby works at in 2021. We have yet to seriously discuss our options of what to do when that happens.
Once the next month's budget has reached it's zero-based balance and we've finished telling our money where to go, I begin my scripture study, plan my week, and read some of the talks for my religion class--the only class we could afford without taking out any loans for now, and it is a required course. It's on the Proclamation to the World on the Family, and I'm really enjoying it. It keeps my mind off my problems, and sometimes even the clock.
Chemo brain strikes and I'm almost late to my local choir practice. I feel well enough to stand up when requested today, and that's a major win for me right now.
Choir goes too quickly, but not quite quick enough for Bilbo (my stoma) who made his voice known one too many times. My personal favorites are during the rests in the song when he gets his own solo. Because of his activity, I'm beginning only slightly regret my choice on Saturday of eating the delicious cookies Hubby made from my Mom's awesome recipe for his office party the night before. Thankfully, only the outbursts I don't cover fast enough are the loud ones, and the pouching system makes it so no one can smell it, which is nice for me, however, now they need to figure out a way to better muffle it.
It's dinner, family scripture study, and bedtime once I get back home. I'm still stalling, however, and get to bed at one o'clock with an appointment the next day at 8:15 with my doctor before we do another round of chemo. It's as if my mind thinks "If I just don't go to bed the day before chemo, then It'll make it so tomorrow never comes!"
It always comes.
It's Sunday before chemo, and I'm shuffling my feet--badly. The anticipation of "Chemo day" makes it so I subconsciously sabotage my whole weekend with stalling and time-optimism. I get to Church late because my wafer needs changing today because I can smell it (thankfully no one else can or if they can they don't mention it).
Don't know what a wafer is? Well, here are some pictures of different pouching systems I use/have used:
First, I started with a drain-able system because that's what the hospital originally put on me to teach me how to do it. Well, that made it so I took a ton of time in the bathroom emptying and cleaning out so there wasn't a residual smell after the drain. There was always a residual smell that I could smell even if no one else said they could, so I stopped using them. For me. It's on my body anyway.
Then I used the one-piece disposable system until I gained too much weight from the steroids they have me on now. This is my favorite pouching system so far because I feel a lot cleaner, and it goes a lot faster. Only down side is the release of gas is difficult occasionally. It's easy with a two-piece system.
Now I currently use a convex wafer and a disposable clip on. It's fine because it works without any blowouts or leaks, so I'm happy for now. Once I lose the weight though (which should happen quickly being that it's steroidal), I'll probably go back to the one-piece system.
So now that you've been introduced to a few of the different systems of one brand of colostomy bags, if you want to know more, there are many different videos on YouTube you could watch.
I hop in the shower with my stoma exposed, and feel more clean than any other day I don't need to change my wafer.
I woke up at a time that would have made it so I was early to church if I was "normal" aka bagless, so I know before I even start getting ready that I'm going to Church late--because, again, stalling. Hubby takes care of the wound dressing change so my "not-quite-yet Barbie Butt" can finish its healing process. Here's what he uses to do that:
True love.
 |
| source is from a Facebook friend's profile |
After Church, I don't stay for choir practice like I used to. I'm too unpredictable with my schedule because I don't know when my nausea spells hit (even with anti-nausea medications--not the one that sends me to the ER, of course), and I like to save my energy if I have some to give for my auditioned civic choir I'm a part of that I rehearse with later in the day on Sundays. The rehearsals go for 2-5 hours depending on how many rehearsals we have before our concert.
Once home from Church, I sometimes change my clothes into something more comfy (literally like sweats, not in the ironic or sexy sense at.all.), and sometimes I don't. It depends on my stoma, Bilbo. When I'm in public, I excuse myself to the bathroom to adjust fecal matter (we all know it's in there) to the bottom of the pouch to avoid "pancaking" of the fecal matter. The more "pancaking" that happens near the stoma, the more likely I have a blowout or leak. I can only wear stretchy pants (is more than for fun, is necessary, Nacho Libre) because of Bilbo as well. Jeggings, leggings, and joggers for me! Oh, and of course activewear.
When I'm at home alone, I'll let the pouch hang out so the risk of "pancaking" is essentially eliminated, however, I don't think my family appreciates it much. They've stopped mentioning it anyway. Ostomate girl's gotta do what ostomate girl's gotta do.
This Sunday was budget day. I used to like budget Sunday. We use a budget program called You Need A Budget or YNAB, that we very much enjoy. At first it was really nice to see that savings grow and the optometry school debt go down, but since cancer it's been us just getting by. This budget Sunday aster we allocated our funds to the bare minimum requirements for every category where we cannot miss a payment--utilities, food, clothing, mortgage, student loans, and kids activities (of which we chose the cheapest ones, ever--PE through the local Boys and Girls Club, one dance class for one child, orchestra for one child, swim lessons through the YMCA, and violin lessons). We've still found ourselves without a check from CHM now since September of last year which barely paid for much but we were still very grateful, and every time we sit and wait for their help we end up just barely getting by or literally not paying medical bills for a month. We're broke, simply put. And this is even following Dave Ramsey's plan. "Baby step 1": Cut up the credit cards, get on a budget (YNAB), and have a $1000 emergency fund. We've now been paying off debt ("baby step 2") as our main goal (why I've been such a workaholic) since we moved here in 2012. With our current basic payments (mortgage and student loan debt payments) over half of Hubby's current paycheck is gone per month. So, I worked too (not so much now, and I can't make what he makes... yet), and we are on track to have his student loan debt paid for by 2022 (IF we stay in our current situation without going back to the way it was before--paying off some principle. It would, of course, be nice if paying principle off monthly again was the case.) We don't qualify for medicaid and I don't qualify for disability.
We are frugal, but we are still broke. We will own the practice Hubby works at in 2021. We have yet to seriously discuss our options of what to do when that happens.
Once the next month's budget has reached it's zero-based balance and we've finished telling our money where to go, I begin my scripture study, plan my week, and read some of the talks for my religion class--the only class we could afford without taking out any loans for now, and it is a required course. It's on the Proclamation to the World on the Family, and I'm really enjoying it. It keeps my mind off my problems, and sometimes even the clock.
Chemo brain strikes and I'm almost late to my local choir practice. I feel well enough to stand up when requested today, and that's a major win for me right now.
Choir goes too quickly, but not quite quick enough for Bilbo (my stoma) who made his voice known one too many times. My personal favorites are during the rests in the song when he gets his own solo. Because of his activity, I'm beginning only slightly regret my choice on Saturday of eating the delicious cookies Hubby made from my Mom's awesome recipe for his office party the night before. Thankfully, only the outbursts I don't cover fast enough are the loud ones, and the pouching system makes it so no one can smell it, which is nice for me, however, now they need to figure out a way to better muffle it.
It's dinner, family scripture study, and bedtime once I get back home. I'm still stalling, however, and get to bed at one o'clock with an appointment the next day at 8:15 with my doctor before we do another round of chemo. It's as if my mind thinks "If I just don't go to bed the day before chemo, then It'll make it so tomorrow never comes!"
It always comes.
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